Can’t We Talk About Something More Pleasant? by Roz Chast is a compelling graphic memoir about the struggle Chast goes through as she watches her parents age and eventually die.
Although I have seen my parents grieve the loss of three of my grandparents, I have not yet experienced that kind of loss firsthand. And it’s definitely not an experience my parents felt necessary to discuss with me or vice versa.
People don’t talk about death and dying in our culture, even though it affects every single person at some point in their lives. However, Chast’s memoir broached the subject in such an endearing and accessible way that it got me thinking: what is it about graphic memoirs that make addressing such difficult, even taboo topics more approachable than a traditional novel?
Hello, this is Marissa Lamer for the Radio Readers Book Club and I am coming to you from the public library in Hays, KS. Growing up I was rarely exposed to any type of graphic novels and comics. As I worked my way through college towards a career as a librarian, graphic novels became a genre of literature that grew increasingly intriguing, especially ones that were memoirs and nonfiction. I hesitantly started with a small graphic novel every now and then but have slowly come to truly enjoy and appreciate the value they add to reading.
Can’t We Talk About Something More Pleasant is a blend of comic strips and paragraphs of memoir. Chast finds the humor in an otherwise depressing time in the life of both her and her parents. For example, her mother’s increasingly outlandish stories help ease the pain of death reflected in more somber moments like when Chast stated “I could see that they were slowly leaving the sphere of TV commercial old age and moving into the part of old age that was scarier, harder to talk about, and not a part of this culture.”
The illustrations provide context and a visual for the parts of Chast’s story that are the most emotional and difficult to express in words.
Graphic memoirs like Chast’s make tough topics more accessible. They provide an abundance of extra layers in the writing style, illustrations, and format of the book that a traditionally written memoir cannot provide.
Scholar Eileen M. Richardson describes this advantage, “graphic novels are more than just stories with pictures; they have engaging illustrations that help readers infer the emotions and motivations of characters as well as more fully understand the twists and turns within the plot.”
Using visuals along with text can provide greater insight into the human condition and subjects that are tough to talk about or lay outside our cultural spheres.
Can’t We Talk About Something More Pleasant? is just the tip of the iceberg when it comes to graphic novels exploring thought-provoking subjects.
Here are a few to add to your reading list: Maus by Art Spiegelman is a two-volume, Pulitzer-Prize-winning graphic novel. The only graphic novel to be awarded such an honor. Animal characters are used to stereotype different races and nationalities illustrating the story of Spiegelman’s parents surviving the Holocaust and his relationship with his father.
Persepolis by Marjane Satrapi is another two-volume memoir of a girl growing up in Iran during the Islamic Revolution. It paints a vivid portrayal of life in Iran during a turbulent time through the eyes of a child.
The March trilogy by John Lewis and Andrew Aydin has won multiple awards and chronicles Lewis’ thoughts, feelings, and experiences throughout the Civil Rights Movement. The illustrator uses emotional black-and-white imagery which captures the raw emotion of people portrayed during this pivotal time in history.
Once again, this is Marissa Lamer coming to you from Hays for the Radio Readers Book Club. I hope you have enjoyed reading Can’t We Talk About Something More Pleasant? and the next time you are deciding what to read, you consider adding a graphic memoir to the list.
With more Americans living longer and aging in place, more also want to die at home.
Few, however, actually do.
Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.
“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”
Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.
Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.
Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.
According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.
Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.
“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”
Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.
Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.
Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.
“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”
She also provides caregiving tips and suggests ways to connect with people in their final days.
“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”
Clayton’s book describes the hope, healing and support that home hospice care offers.
Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.
“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”
Karen Clayton will discuss hospice care and her book at the following free events open to the public:
Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library
Although everyone experiences anticipatory grief—a feeling of loss before a death or dreaded event occurs—some have never heard of the term. I didn’t understand the power of anticipatory grief until I became my mother’s family caregiver. My mother suffered a series of mini strokes and, according to her physician, they equaled Alzheimer’s disease. I cared for my mother for nine years and felt like she was dying right before my eyes.
To help myself, I began to study anticipatory grief. While I cared for my mother I wrote a book on the topic. Writing a book parallel to my mother’s life was an unusual experience. Later, Dr. Lois Krahn, a Mayo Clinic psychiatrist, helped me with the final version. Our book, Smiling Through Your Tears: Anticipating Grief, was published in 2005.
Writing the book made me aware of the power of anticipatory grief and I went on AG alert. I had severe anticipatory grief when my husband’s aorta dissected in 2013. My husband was literally bleeding to death. Surgeons operated on him three times in a desperate attempt to stop the bleeding. Every time he went to surgery I thought it would be the last time I would see him.
My grief was so intense I began to plan his memorial service.
Although you realize you’re experiencing anticipatory grief, you may not understand its power. Here are some of the sources of that power.
Your thoughts jump around. You think about the past, the present, and a future without your loved one. These conflicting thoughts can make you worry about yourself. Friends may notice your distraction and think you have some sort of psychological problem. You don’t have a problem; you are grieving.
Every day is a day of uncompleted loss. If you are a long-term caregiver as I was, you wonder if your grief will ever end. Worse, you may wonder if you will survive such intense feelings. You may start to feel like anticipatory grief is tearing you apart.
The time factor can grind you down. Since you don’t know when the end will come, you are on constant alert. Friends may not understand your feelings and wonder why you’re grieving if nobody has died. Explaining your feelings to others is hard because you can hardly track them yourself.
Suspense and fear are part of your life. Because you fear others won’t understand, you keep your feelings to yourself. Grief experts call this “stuffing feelings” and you may feel stuffed with worry, insecurity, and sadness. Uncertainty seems to rule your life.
Anticipatory grief can become complex. Grief expert Therese A. Rando, PhD, author of the article, “Anticipatory Grief: The Term is a Misnomer but the Phenomenon Exists,” says anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding. “I’m tired of waiting for my mother to die,” a friend of mine admitted. I understood her feelings.
There is a shock factor. Edward Myers, in his book When Parents Die: A Guide for Adults, says anticipatory grief doesn’t have the shock of sudden death, yet it exacts a terrible toll. As he writes, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”
Lack of an endpoint. Although you may think you know when your loved one’s life will come to a close, you aren’t really sure. Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief.
You feel sorrow and hope at the same time. Hope may be the most unique aspect of anticipatory grief. While you’re grieving you hope a new drug will be invented, new surgery will be developed, or your loved one will experience a miraculous turn-around. Hope can keep you going.
Understanding anticipatory grief can keep you going too. Joining The Caregiver Space Facebook groups can be a source of support and hope. Remember, you are not alone. You are in the company of thousands of other caregivers, and we can help each other.
“The road to death,” the anthropologist Nigel Barley wrote, “is paved with platitudes.”
Book reviewers, I’m afraid, have played their part.
The robust literature of death and dying is clotted with our clichés. Every book is “unflinching,” “unsparing.” Somehow they are all “essential.”
Of course, many of these books are brave, and many quite beautiful. Cory Taylor’s account of her terminal cancer, “Dying: A Memoir,” is one recent standout. But so many others are possessed of a dreadful, unremarked upon sameness, and an unremitting nobility that can leave this reader feeling a bit mutinous. It’s very well to quail in front of the indomitable human spirit and all that, but is it wrong to crave some variety? I would very much like to read about a cowardly death, or one with some panache. I accept, grudgingly, that we must die (I don’t, really) but must we all do it exactly the same way?
Enter “Advice for Future Corpses (and Those Who Love Them),” by the writer, palliative-care nurse and Zen Buddhist Sallie Tisdale — a wild and brilliantly deceptive book. It is a putative guide to what happens to the body as it dies and directly after — and how to care for it. How to touch someone who is dying. (“Skin can become paper-thin, and it can tear like paper. Pressure is dangerous.”) How to carry a body and wash it. How to remove its dentures.
But in its loving, fierce specificity, this book on how to die is also a blessedly saccharine-free guide for how to live. There’s a reason Buddhist monks meditate on charnel grounds, and why Cicero said the contemplation of death was the beginning of philosophy. Tisdale has written extensively about medicine, sex and faith — but spending time with the dying has been the foundation of her ethics; it is what has taught her to understand and tolerate “ambiguity, discomfort of many kinds and intimacy — which is sometimes the most uncomfortable thing of all.”
It should be noted that this book is not for the queasy. Frankly, neither is dying. Tisdale writes calm but explicit descriptions of “the faint leathery smell” of dead bodies and the process of decomposition. “A dead body is alive in a new way, a busy place full of activity,” she writes. She offers paeans to the insects that arrive in stately waves to consume the body — from the blowflies that appear in the first few minutes of death to the cheese skippers, the final guests, which clean the bones of the last bits of tendon and tissue.
This is death viewed with rare familiarity, even warmth: “I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, ‘C’mon, Margaret. You can do it!’” Tisdale writes. She walks readers through every conceivable decision they will have to make — whether to die in the hospital or at home, how to handle morphine’s side effects and how to breathe when it becomes difficult (inhale through pursed lips).
To the caretaker, she writes: “You are the defender of modesty, privacy, silence, laughter and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.”
“Advice for Future Corpses” also offers a brisk cultural history of death rituals and rites, from traditional Tibetan sky burials to our present abundance of options. You can have your ashes mixed into fireworks, loaded into shotgun shells or pressed into a diamond. You can ask to be buried at sea (but don’t — too much paperwork). You can be buried in a suit lined with micro-organisms and mushrooms to speed decomposition, or let a Swedish company cryogenically freeze your remains and turn them into crystals. If you’re in Hong Kong or Japan, you have the option of virtual graves, where flowers can be sent by emoticon.
Tisdale’s perspective is deeply influenced by her Buddhist practice, never more so than when she considers how the mind might apprehend death as it nears: “Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically.”
Tisdale does not write to allay anxieties but to acknowledge them, and she brings death so close, in such detail and with such directness, that something unusual happens, something that feels a bit taboo. She invites not just awe or dread — but our curiosity. And why not? We are, after all, just “future corpses pretending we don’t know.”
By Jesse Ball
272 pp. Ecco/HarperCollins Publishers. $25.99.
[J]esse Ball is one of our most prolific experimentalists. His last few novels, starting with the excellent “Silence Once Begun,” demonstrate a mature style that feels less like an experiment than a means to communicate deep emotional truths without the clutter of too many narrative conventions.
“Census,” Ball’s eighth and latest novel, may be his most emotionally affecting book to date. It is also his most transparent. In a candid preface, Ball explains that he wrote “Census” in memory of his brother, Abram Ball, who had Down syndrome. Ball sets out to write a book that captures “what it is like to know and love a Down syndrome boy or girl.”
In “Census,” a father and son journey across a nameless, dystopian land. The father, a recent widower and retired doctor, has just received news that he is dying. Both he and his wife had always meant to travel, but because their son was born with Down syndrome, they talked themselves out of it. The cruelty of others kept them from the road: “Ever since he was born, our lives, my wife’s, mine, bent around him like a shield.” Now, with his wife passed on, his son grown and his own end very near, he devises a plan to become a census taker, which will take him and his adult son on a cross-country road trip.
The census itself is part of the novel’s central mystery. It is both a survey of the population and an existential measurement. The father explains, “I must, in speaking to a person, know what is special about that individual, and that data must pass through me … in such a way that what is … most special about the nation … could be known and felt.” He asks participants to tell their own unique stories, after which they are marked — tattooed — on a rib, proof that they have been tallied. While the census may sound like an Orwellian device, Ball is more concerned with his characters’ emotional lives than with authoritarian foreboding. The father and son move from region to region, entering strangers’ homes, administering the census. With each new encounter a story from the narrator’s life is revealed. The best of these recall him falling in love with his wife, a renowned clown and performance artist who is also one of the novel’s most dynamic characters. In one lovely scene, prompted by his encounter with two eccentric sisters who conjure the Beales of “Grey Gardens,” the narrator remembers a performance in which giant pieces of silverware, a knife and fork, hovered overhead as his wife and other clowns evaded them. In a novel that ruminates so heavily on death, such memories provide a celebratory sense of joy.
While Ball accomplishes the stated goal of his preface, bringing the son with Down syndrome to life, the census itself leaves a little to be desired. If the narrator aims to hear each citizen’s story, that which is “most particular, most special,” he never shares enough details to make a lasting impression. This creates a kind of flatline with regard to the central conceit. Without more of the particulars, “the small, the overlooked,” it’s hard to understand what the census is meant to measure.
Yet the spare and episodic encounters do take us to some tender places. In one scene, a mother who raised a girl with Down syndrome recognizes the narrator as someone who sees what she sees in their children: “They experience the world just as we do, maybe even in a clearer light.” More than a dystopian tale, “Census” is a profound and stirring meditation on love, loss and paternity.
[P]eople still sometimes discuss the question of how you could tell that you were talking to some form of artificial intelligence rather than an actual human being. One of the more persuasive suggested answers is: “Ask them how they feel about dying.” Acknowledging that our lifespan is limited and coming to terms with this are near the heart of anything we could recognise as what it means to be human.
Once we discovered that Neanderthals buried their dead with some ritual formality, we began to rethink our traditional species snobbery about them and to wonder whether the self-evident superiority of homo sapiens was as self-evident as all that. Thinking about dying, imagining dying and reimagining living in the light of it, this is – just as much as thinking about eating, sex or parenting – inseparable from thinking about our material nature – that to have a point of view at all we have to have a physical point of view, formed by physical history. Even religious systems for which there is a transition after death to another kind of life will take for granted that whatever lies ahead is in some way conditioned by this particular lifespan.
Conversely, what the great psychoanalytic thinker Ernest Becker called “the denial of death” is near the heart of both individual and collective disorders: the fantasy that we can as individuals halt the passage of time and change, and the illusions we cherish that the human race can somehow behave as though it were not in fact embedded in the material world and could secure a place beyond its constraints. Personal neurosis and collective ecological disaster are the manifest effects of this sort of denial. And the more sophisticated we become in handling our environment and creating virtual worlds to inhabit and control, the looser our grip becomes on the inexorable continuity between our own organic existence and the rest of the world we live in.
It’s a slightly tired commonplace that we moderns are as prudish in speaking about death as our ancestors were in speaking about sex. But the analogy is a bit faulty: it’s not simply that we are embarrassed to talk about dying (although we usually are), more that we are increasingly lured away from recognising what it is to live as physical beings. As Kathryn Mannix bluntly declares at the beginning of her book about pallia-tive care, “It’s time to talk about dying”. That is if we’re not to be trapped by a new set of superstitions and mythologies a good deal more destructive than some of the older ones.
Each of these books in its way rubs our noses in physicality. Caitlin Doughty’s lively (and charmingly illustrated) cascade of anecdotes about how various cultures handle death spells out how contemporary Western fastidiousness about dead bodies is by no means universally shared. We are introduced to a variety of startling practices – living with a dead body in the house, stripping flesh from a relative’s corpse, exhuming a body to be photographed arm in arm with it… all these and more are routine in parts of the world. And pervading the book is Doughty’s ferocious critique of the industrialisation of death and burial that is standard in the United States and spreading rapidly elsewhere.
Doughty invites us to look at and contemplate alternatives, including the (very fully described) composting of dead bodies, or open-air cremations. A panicky urge to get bodies out of the way as dirty, contaminated and contaminating things has licensed the development of a system that insists on handing over the entire business of post-mortem ritual to costly and depersonalising processes that are both psychologically and environmentally damaging (cremation requires high levels of energy resource, and releases alarming quantities of greenhouse gases; embalming fluid in buried bodies is toxic to soil). Doughty has pioneered alternatives in the US, and her book should give some impetus to the growing movement for “woodland burial” in the UK and elsewhere. At the very least, it insists that we have choices beyond the conventional; we can think about how we want our dead bodies to be treated as part of a natural physical cycle rather than being transformed into long-term pollutants, as lethal as plastic bags.
Talking about choices and the reclaiming of death from anxious professionals takes us to Kathryn Mannix’s extraordinary and profoundly moving book. Mannix writes out of many years’ experience of end-of-life care and presents a series of simply-told stories of how good palliative medicine offers terminally ill patients the chance of recovering some agency in their dying. Those who are approaching death need to know what is likely to happen, how their pain can be controlled, what they might need to do to mend their relationships and shape their legacy. And, not least, they need to know that they can trust the medical professionals around to treat them with dignity and patience.
Mannix’s stories are told with piercing simplicity: and there is no attempt to homogenise, to iron out difficulties or even failures. A recurrent theme is the sheer lack of knowledge about dying that is common to most of us – especially that majority of us who have not been present at a death. Mannix repeatedly reminds us of what death generally looks like at the end of a degenerative disease, carefully underlining that we should not assume it will be agonising or humiliating: again and again, we see her explaining to patients that they can learn to cope with their fear (she is a qualified cognitive behavioural therapist as well as a medical professional). It is not often that a book commends itself because you sense quite simply that the writer is a good person; this is one such. Any reader will come away, I believe, with the wish that they will be cared for at the end by someone with Mannix’s imaginative sympathy and matter-of-fact generosity of perception.
Sue Black’s memoir is almost as moving, and has something of the same quality of introducing us to a few plain facts about organic life and its limits. She moves skilfully from a crisp discussion of what makes us biologically recognisable as individuals and how the processes of physical growth and decay work to an account of her experience as a forensic anthropologist, dedicated to restoring and making sense of bodies whose lives have ended in trauma or atrocity. The most harrowing chapter (and a lot of the book is not for those with weak stomachs) describes her investigations at the scene of a massacre in Kosovo: it is a model of how to write about the effect of human evil without losing either objectivity or sensitivity.
Perhaps what many readers will remember most vividly is her account of her first experience of working as a student with a cadaver. For all the stereotypes of the pitch-dark and tasteless humour of medical students in this situation, the truth seems to be that a great number of them actually develop a sense of relatedness and indebtedness to the cadavers they learn on and from. Black writes powerfully about the sense of absorbing wonder, as the study of anatomy unfolds, of the way in which it reinforces an awareness of human dignity and solidarity – and of feeling “proud” of her cadaver and of her relation with it.
For what it’s worth, having taken part in several services for relatives of those who have donated their bodies to teaching and research, I can say that the overwhelming feeling on these occasions has been what Black articulates: a moving mutual gratitude and respect. And the book is pervaded by the sense of fascinated awe at both the human organism and the human self that comes to birth for her in the dissecting room.
Richard Holloway writes not as a medical professional but as a former bishop, now standing – not too uneasily – half in and half out of traditional Christian belief, reflecting on his own mortality and the meaning of a life lived within non-negotiable limits. His leisurely but shrewd prose – with an assortment of poetic quotation thrown in – is a good pendant to the closer focus of the other books, and he echoes some of their insights from a very different perspective. Medicine needs to be very wary indeed of obsessive triumphalism (the not uncommon attitude of seeing a patient’s death as a humiliation for the medical professional); the imminence of death should make us think harder about the possibility and priority of mending relations; the fantasy of everlasting physical life is just that – not a hopeful prospect, but the very opposite.
He has some crucial things to say about the politics of the drive towards cryogenic preservation. Even if it were possible (unlikely but at best an open question) it is something that will never be available to any beyond an elite; any recovered or reanimated life would be divorced from the actual conditions that once made this life, my life, worth living; how would a limited physical environment cope with significant numbers of resuscitated dead? The book deserves reading for these thoughts alone, a tough-minded analysis of yet another characteristic dream of the feverish late-capitalist individual, trapped in a self-referential account of what selfhood actually is.
Odd as it may sound, these books are heartening and anything but morbid. Mannix’s narratives above all show what remarkable qualities can be kindled in human interaction in the face of death; and they leave you thinking about what kind of human qualities you value, what kinds of people you actually want to be with. The answer these writers encourage is “mortal people”, people who are not afraid or ashamed of their bodies, those bundles of rather unlikely material somehow galvanised into action for a fixed period, and wearing out under the stress of such a rich variety of encounter and exchange with
None of these books addresses at any great length the issues of euthanasia and assisted dying, but the problem is flagged: Black says briskly that she hopes for a change in the law (but is disarmingly hesitant when it comes to particular cases), while Mannix, like a large number of palliative care professionals, strikes a cautionary note. She tells the story of a patient who left the Netherlands for the UK because he had become afraid of revealing his symptoms fully after being (with great pastoral sensitivity and kindness) encouraged by a succession of doctors to consider ending his life. “Be careful what you wish for,” is Mannix’s advice; and she is helpfully clear that there are real options about the ending of life that fall well short of physician-assisted suicide.
Like all these authors, she warns against both the alarmist assumption that most of us will die in unmanageable pain and powerlessness and the medical amour propre that cannot discern when what is technically possible becomes morally and personally futile – when, that is, to allow patients to let go. The debate on assisted dying looks set to continue for a while yet; at least what we have here goes well beyond the crude slogans that have shadowed it, and Mannix’s book should lay to rest once and for all the silly notion occasionally heard that palliative care is a way of prolonging lives that should be economically or “mercifully” ended.
The most important contribution these books make is to keep us thinking about what exactly we believe to be central to our human condition. It is not a question to answer in terms simply of biological or neurological facts but one that should nag away at our imagination. How do we want to be? And if these writers are to be trusted, deciding that we want to be mortal is a way of deciding that we want to be in solidarity with one another and with our material world, rather than struggling for some sort of illusory release.
Richard Holloway doesn’t quite say it in these terms, but the problem of a humanity that doesn’t need to die is that it will be a humanity that needs no more births. The price of a humanity that actually grows and changes is death. The price of eternal life on earth is an eternal echo chamber. As someone once said around this time of year: “Unless a grain of wheat falls to the ground and dies, it remains only a single seed.”
Waiting for the Last Bus: Reflections on Life and Death
Richard Holloway Canongate, 176pp
All that Remains: a Life in Death
Sue Black Doubleday, 368pp
From Here to Eternity: Travelling the World to Find the Good Death
Caitlin Doughty Weidenfeld & Nicolson, 272pp
With the End in Mind: Dying, Death and Wisdom in an Age of Denial
Kathryn Mannix William Collins, 352pp
Many writers have tried to encourage conversations about dying, often with the aim of helping us achieve a ‘good death’.
By Jane Mccredie
[A]t dusk some years ago, I walked past an open doorway in the southern Italian village of Paestum. Just inside, a body lay on a table, candles surrounding it, as locals filed in and out, paying their respects.
It struck me at the time how different this was from the general Australian experience, where the end of life is sanitised, hidden and often medicalised to the point of cruelty.
For centuries, our ancestors would have tended their dying relatives, washed their bodies, stood vigil over them in the homes where they lived and died. Many people around the world still do this, of course, but we in the West are more likely to end our days in aged care or, worse, a hospital intensive care unit. We may be subjected to futile, traumatic interventions right up to the moment we take our last breath.
In recent years a number of writers have sought to encourage franker conversations about dying, often with the stated aim of helping us to achieve a “good death”. Notable local books have come from intensive care physician Ken Hillman, general practitioner Leah Kaminsky and science writer Bianca Nogrady. But the reluctance to talk about death remains.
“It has become taboo to mention dying,” writes British palliative care physician Kathryn Mannix in With the End in Mind:
This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like “passed” or “lost’’ have replaced “died” and “dead”. Illness has become a “battle”, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having “lost their battle”, rather than simply having died.
We must reclaim the language of dying, Mannix argues. Clear, unambiguous conversations about what is ahead offer support to the dying person as well as those who will mourn their death. “Pretence and well-intentioned lies” separate the dying from those they love, wasting the limited time they have left. Mannix first discovered the power of straightforward language as a junior doctor when a superior offered to describe to an anxious patient “what dying will be like”. “If he describes what? I heard myself shriek in my head.”
The senior doctor went on to describe in detail the pattern of dying he had observed over years of practice: increasing tiredness, more time spent sleeping, a gradual drift into unconsciousness, followed by changed respiratory rhythms until the breath finally stopped. “No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful … ” he told the patient.
Back in the tearoom, he told the young Dr Mannix this was probably the most helpful gift they could give their patients. “Few have seen a death,” he explained. “Most imagine dying to be agonised and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see something terrible.” Mannix was left amazed that it was possible to be this honest with patients, revising her “ill-conceived beliefs about what people can bear”, beliefs that could have prevented her from having the courage to tell the truth.
Over the decades since that paradigm-shifting experience, she helped countless people of all ages and backgrounds through the final stages of their lives. Their stories are threaded through this moving and informative book. “The process of dying is recognisable,” Mannix writes:
There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.
In Letting Go: How to Plan for a Good Death, Australian intensive care specialist Charlie Corke offers practical tools to help people make and communicate decisions about how they would want to be treated at the end of life.
Corke’s professional experience leads him to paint a very different picture of dying from that offered by Mannix. The specialties of intensive and palliative care are in some ways polar opposites: intensive care does everything possible to ward off the inevitable, while palliative care accepts death, seeking to ease the patient’s approach to it.
Corke admires the triumphs of modern medicine and the many achievements of his specialty, but he has also seen how easy it is for medical treatment to go too far. Most of us will die in old age, after a long period of declining health, he writes. One crisis or another will lead to us being taken to hospital by ambulance where, in the absence of clear instructions from us, medical intervention will escalate:
We will spend our last days connected to machines, cared for by strangers, and separated from our family. We will experience significant suffering, discomfort and indignity, receiving increasingly intense treatment that has a diminishing chance of success. Medical technology will dominate our last days and weeks. Our family will be excluded from the bedside, huddled in the waiting room, while “important” things are done to us. Time for connection and comforting, for any sort of intimacy or the opportunity to say goodbyes, will be missed …
The purpose of this book is to help people avoid that outcome. Corke offers clear advice on questions to ask doctors, on writing and sharing a plan, and on appointing a substitute decision-maker to step in if we are unable to express our own views.
Above all, he stresses the importance of clear, unambiguous communication about what we want to happen at the end of life. If there is any doubt about our wishes, maximum intervention will be the result:
Wishes matter, but it can be difficult to get them heard. Wanting to be saved is easy. “To do whatever is required to save” is what everyone wants to do for you, needs to do, and is expected to do. It’s what our medical system is designed to do. It’s the default; it’s what you get. When we want to set limits, it’s more difficult …
All in all, this is a useful how-to manual for everybody who will at some point face death (which is of course all of us).
In Every Note Played, Lisa Genova chooses a different form to explore the end of life.
Over the decade since publication of her first novel, Still Alice, which was filmed with Julianne Moore in the lead role, Genova has mined her background as a neuroscientist for fictional material, producing novels about dementia, autism, traumatic brain injury and Huntington’s disease. In her fifth novel, she turns her attention to amyotrophic lateral sclerosis, telling the story of Richard, an acclaimed concert pianist diagnosed with the disease at the height of his career.
ALS is the central, and strongest, character in this book, dwarfing the somewhat one-dimensional human actors and the overneat redemptions they achieve. The merciless progression of the neurodegenerative condition is described with elegant, sometimes gruesome, precision as Richard loses the ability to control first his arms, then legs and, ultimately, everything but his eyes
As in the real-life case studies presented by Corke and Mannix, the approach of death presents Richard and those close to him with appalling dilemmas: How much can we ask of others? How far should we go to preserve life? What does quality of life mean?
Richard’s state of mind as his disease progresses is not helped by the hearty refusal of his brothers to accept the inevitability of his fate. “What are you doing to fight it?” one asks when he sees Richard in a wheelchair. “You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”
Richard manages a slurred response — “Goo-i-de-a” — while privately wondering at his footballer brother’s incomprehension of his condition:
Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record … High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.
Richard’s brothers, like all of us, might have benefited from a share in what Mannix refers to as her “peculiar familiarity with death”:
Strangely, this is not a burden or a sadness, but a lightning of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time we can really experience is this present, evanescent moment.